Worried about unnecessary operation

Could your father be misunderstanding that your mother is being offered a catheter?

I did wonder this. She will need catheter care if so, which either he could learn to do some of, but most likely she'll need regular visits from the District Nurses, for things such as change, flush, deal with blockages. It IS really important that he is allowing appropriate HCPs to come and assess and treat her, so that is one reason you can take things further, if you think he's denying her appropriate care. However, some assessments and offers of help are properly optional, so don't jump to conclusions. You need to tread carefully as he could make it hard for you to access your mother if he digs his heels in and that wouldn't help her in the long run.

*would most benefit from, isn't the right way to go about things at all.

Long answer, sorry.

Haven't RTFT but one issue here is whether your father is your mother's Attorney, as in there being a registered Last Power of Attorney naming him, that was made before she lost capacity (this bit is important but can be hard to discern if made in the early stages post-diagnosis). Because if he is her Attorney he CAN make medical decisions for her. So go and look up LPAs ASAP and find out whether there is one and whether she ticked the additional optional box about life-or-death decisions (for the future although could come into play post-op).

Your concerns do sound valid, especially if it isn't an NHS op. That doesn't mean you are right but that being concerned, with the info you have, is valid. So if you are genuinely concerned about her wellbeing, whether it's about this or anything else, you always have the right to contact Social Services, maybe to have a chat about the situation initially. You could also talk to a solicitor about your options if an LPA does exist and if one doesn't, as there are further channels to go down with welfare concerns, depending.

I do think that booking care in for her when you don't necessarily have the legal right to do that, and against her main carer's wishes, and therefore not taking full account of what she or her carer would most benefit from. Speaking with personal knowledge, having carers in who don't know the patient, aren't always more than basically trained, and often a rotating roster of them, can be more trouble than it is worth and sometimes harms that patient. Plus having people coming into the marital home isn't everyone's cup of tea. If he's well and he's coping, maybe him doing it all is, for now, the best thing.

I understand you are concerned for your Mum though, that is only natural and it is good you are looking out for her, just go about it via the right channels in the right ways.

Does he have PoA for health and welfare, do you and do you have any siblings? This is very important.

My father has Alzheimer’s and my aunt had it and she was also doubly incontinent.

I would not put anyone with Alzheimer’s through an operation.

I’m not sure why your DM’s incontinence is waking DF during the night? My aunt had mega incontinence pants for the night that kept everything in to be changed in the morning. If DM is leaking it’s worth changing the brand because some are much more effective than others, and worth getting separate beds with a waterproof sheet so it can be cleaned easily.

I would be as concerned as you are that your father is not making rational decisions.

But if you don’t have PoA and he does, the only thing you can do is request an assessment.

Wonder if she’s just having a cystoscopy if it’s something without a wound? It’s very routine urology list stuff and would exclude/help diagnose/possibly allow treatment of any physical problem contributing to incontinence. A urologist probably wouldn’t be doing any sort of prolapse repair or whatnot - that would more likely be gynae/urogynae.

And it's not at all obvious that my dad knows what he's doing. When he phoned me today, having read this thread I asked 'what about after care? Looking after the wound and so on' and he said that there wouldn't be any wound, and no need for any after care. That's possible I guess, but could also be wrong!

It is possible. ( I had urinary stress incontinence from a prolapse, totally fixed by (GA) surgery per vagina. No wound, no post op pain).

On another tack; have you considered asking any local residential care homes if they offer outpatient day care for dementia? I mean the sort where your mum would go for a day, have a nice lunch , maybe get her hair done or have a bath, and Dad collect her later. Respite break for him.

I heard someone from some sort of services phone my dad (when he was at my house) and ask to visit my mum, and my dad said no

Dp's dad was like this - aggressively refusing care on behalf of DP's Mum and yet not managing himself. In the end it was taken out of his hands - DP's Mum fell, fractured her hip and the hospital refused to allow her home as SS knew he would refuse post discharge support. She went to a lovely care home.

All I can suggest Badger is that you contact your SS dept and talk to someone there about your concerns. Then you will sadly have to gird your loins and grit your teeth and wait for the car crash to actually happen.

Could your father be misunderstanding that your mother is being offered a catheter?

It's what FIL was like for MIL - if only they would give this therapy/ provide that equipment my life would be easier but when DH went to appointments with them it was clear that the doctors had already explained why what he was asking for wasn't suitable/wouldn't work. But he would still go on about it to other people. And he would ignore anything he was told about potential side effects ts or aftercare because it wasn't what he wanted to hear.

I wonder if the doctors are suggesting an op or your dad is asking for one in desperation?

Your father is trying to provide the best care he can for his wife. Why should she suffer incontinence and all the increased risks that brings (falls, fractured hips, skin breakdown, etc) because she has delirium or is old? It’s about maintaining her level of independence and allowing them as a couple to cope better. Incontinence isn’t nice. It can often be treated.

Nobody does unnecessary operations. Every urology team will have weighed up the risks and benefits. Of your mother has any capacity at all, in her most lucid moments, she can consent otherwise it will be a clinical best interest decision to proceed. Nobody can insist on surgery if it isn’t in your mothers best interests and few would want to. Improving continence for several years is worth the surgery.

Very rarely is an elective general anaesthetic high risk. Most people who have poor outcomes are already in a poor physical condition, have numerous co-morbidities and have emergency surgery.

Sadly increasing incontinence is part of the disease and pads (think absorbent pants) and Kylie sheets for the bed are a godsend. I work with people like your Mum and often they take oxybutynin to help. Maybe say to your Dad that there are loads of things that a care professional will be able to help them with, if he lets them in to give their advice his life will be easier and your Mum will be more comfortable.

Sounds like my FIL was. Wouldn't discuss anything, could get really angry if you asked questions/suggested anything even when he said he was struggling.

Your poor mum. I would too question why she is having an op for incontinence as any form of dementia will mean that eventually she will be incontinent due to the brain not "connecting" properly with the bladder and bowel. Why put her through all the stress of the op and recovery for something that may be a temporary fix.

I really think that those that are saying it's up to your dad don't actually know what dementia is like!

I think it is unlikely that the NHS in its present state will be carrying out unnecessary operations. If you have POA , you should be able to discuss the operation and its benefits and potential downsides with the surgical team before giving consent. ( unless you share POA with your father, and he is preventing your involvement).

basically, I feel that if the medical team can explain the actual physical benefit of a proposed procedure, and can also discuss the risks, that’s is your decision made for you. If it will result in a better quality of life for your parents, it is the right thing to do.

I hope you find an acceptable explanation, and can set your heart at rest.

she is old-fashioned enough that before alzheimers removed her inhibitions she would never have talked about incontinence with my dad.

Maybe that was mutual?

Perhaps he is too oldfashioned to discuss the details of an intimate operation "down there" with their daughter. Let alone explain all the physical details of the discomforts of adult bladder incontinence.

Is it possible that both she and your dad, have been "sparing" you from the extent of the sheer physical and emotional misery/humiliation SHE feels from bladder incontinence?

Dementia doesn't spare her from the soreness, the whiff, the discomfort and misery of accidents, wet beds, broken nights etc.

There's so much else over which she's losing control and autonomy ; this is one thing that can improve quality of life for both of them . No wonder your dad wants to give her that comfort.

"it seems that alzheimers causes incontinence maybe for reasons that are not just mechanically fixable by an operation on the bladder?"

This was my first thought on reading your post. It is possible there is a pre-existing (mechanically fixable) bladder issue, but if so surely it would have been fixed before this. Then again if a surgeon has agreed to operate, you would hope they are doing so in good faith.

If her incontinence is due to her Alzheimers, the issue is that her brain is not relaying the information that she needs to wee, and surgery on her bladder would be irrelevant. My mother has Alzheimers, she is now late stage and she became incontinent about the end of the mid-stage. It's likely your mother will also become faecally incontinent. Incontinence and night-time disturbance is often the stage at which people with dementia move to a care home, as it is far easier for a team of carers to deal with, than a single (often elderly) carer.

It might be worth speaking to Social Services, but as your dad won't have carers in the house, I wonder if he would accept their help? They cannot force him to do so unless there are safeguarding concerns.

Just adding in another perspective - they're probably of the generation where family look after their own, so outside help is like admitting that they're failing/not managing.

A family friend let her DF battle on caring for her DM - making poor decisions, neither of them living a happy life, until he literally sat in his chair one afternoon and died from a massive heart attack. Her DM has alzheimers, and is like a new woman from being in a care home, medicated properly and getting enough food/drink. It turned out that her DF was muddling medication and not giving her drinks so she didn't wet herself

Sometimes you have to step in and save the carer from themselves. And I know that's hard to hear.